Sunday, February 13, 2011

Is No News Good News?

﻿When Daphne's oxygen levels dropped on Thursday, Dr. Toms put her back on Lasix to see if that would help. At first, it seemed to make a difference, because her oxygen levels picked up for a while. But eventually, her levels dropped again, and it became clear that the lift was just part of a random cycle of rising and falling stats.

At this point, the doctors are vigilant but not panicked. Because Daphne still looks good and doesn’t seem to be in distress, the neonatologist and cardiologist on duty have decided to hold off putting her back on oxygen. Tomorrow Daphne’s regular team will evaluate her stats from the weekend and decide if she needs a heart catheterization. Since she hasn’t shown any progress, I’m assuming that will be the next step.

So why the low oxygen levels? There are several theories, but they all revolve around reduced blood flow to the lungs: (1) There could be a clot in the BT shunt. (2) The ductus arteriosus could have taken part of the pulmonary artery with it when it disappeared, causing narrowing and reduced blood flow. (3) Or, the leading theory, Daphne’s extremely narrow subclavian artery may not be pushing enough blood through the BT shut. Let’s hope we learn more in the coming days.

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Daphne Jane Gainer

A Brief, Beautiful Life

Daphne Jane Gainer was born on January 20, 2011, in Birmingham, Alabama. She was adopted one week later by Will and Rachel Gainer, residents of Salt Lake City, Utah.

Hours after birth, Daphne was diagnosed with a congenital heart defect (CHD) known as pulmonary atresia, which prevents blood from returning to the lungs to receive fresh oxygen and results in a severely underdeveloped right ventricle.

Living with just half a heart, Daphne spent all but three days of her life either in the hospital or on supplemental oxygen. She endured three extended hospital stays, two heart surgeries, one heart catheterization, and countless needle pricks, blood draws, and other tests.

Daphne passed away on March 18, 2011, just hours after undergoing her second heart surgery. Her life on earth lasted just 58 days, but it was both miraculous and inspiring.

This blog is maintained by Daphne's mother, Rachel Gainer. It celebrates Daphne's life, explores the realities of grief, and affirms that death is not the end and families can be together forever.